Sunday, September 27, 2015


Mira is having a ton of myoclonic seizures today. Her toy is the trigger with some of the clusters she is having, but other times, they are just coming from out of nowhere. She woke up and had some time with her toy, which immediately sent her into a cycle of steady myoclonics. The first 10-20 were intense, but they gradually eased up some, so she wasn't interrupted every 20 or 30 seconds by them. She even had a few clusters before she was even out of her bed.

We were out the door early to participate in the Whisper Walk, which Mira was enthusiastic about, for at least the first 45 minutes or so, then everything started to break down. I don't think we were walking fast enough or not creating an exciting enough experience for her, since by the end of it, Mira was irritable and ready to go home. The boys were the same - whining, sweating, and ready to be back in the van. All of the kids internal timers went off simultaneously, peaking at around 90 minutes of being out in the fresh air and sunshine. Apparently, that was all they could muster.

Again this afternoon, Mira continues to have more myoclonics, but intent on playing with her toy and doing nothing else. She is refusing to drink and wants nothing but to try and play uninterrupted. For now, at least she isn't crying - fingers crossed it will continue.

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